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Advice About My Gasroscopy Please....

fozbery

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fozbery Rookie
fozbery
Posted
  • Author

I second Raven and Roda. Celiac disease is not the beginning and end of gluten intolerance. Researchers are confirming what we have known all along, and doctors are finally starting to recognize, that there is such a thing as non-celiac gluten intolerance which requires you to avoid gluten just as strictly as a celiac does. Hence the reason we recommend that everyone who tests negative give the diet a three-month trial anyway, because so often it is the answer to your problems despite no celiac diagnosis. You don't need a doctor's prescription or permission to eat gluten free. :)

Hi there

What is the difference between Celiac and Non celiac gluten intolerance?

I am quite deflated and confused at the moment. My colonoscopy was completely normal according to the doctor. I just called and she said that the extra lymphatic tissue on my ileum is nothing to worry about and that it is quite common in young people and children. She diagnoses IBS.

I feel like I can not accept this diagnosis. I am especially concerned now about the lymphatic tissue on the ileum.

Maybe I am miss-informed but I am under the impression that lymphatic tissue becomes enlarged or swollen when fighting infection like on your tonsils in tonsillitis etc. So what is this tissue fighting in the ileum?

It makes me think that I am obviously putting something into my body that it doesn't like, or that there is something going on that it doesn't like.

I do feel a lot better when gluten free although admittedly I still have constipation and diarrhea issues, but nowhere near as bad.

Any words of wisdom are greatly recieved, I am close to giving up and accepting my fate as an anxiety ridden IBS sufferer! I feel like I am going crazy.

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  • Replies 65
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mushroom Proficient
mushroom
Posted

I don't blame you for not accepting an IBS diagnosis. Firstly, it is not a diagnosis, it is merely a description for symptoms that no one can figure out a cause for. Secondly, I just googled extra lymphatic tissue on the ileum, and one of the answers I came up with: Open Original Shared Link, linked it with early lymphoma, which is a known link with celiac disease. Now I am no doctor, and I do not know what your report said and whether there was any T-cell involvement, and I don't mean to be alarmist here and destroy your equilibrium, but I do think it is time you seek a second opinion on this and find out exactly what this report means.. You need to get a copy of all your results and find another doctor. Do not under any circumstances accept this as a diagnosis. Do you have a major medical center near you which can be trusted, especially one which specializes in celiac disease? Because I think an appointment there is what you need. Something is going on and needs to be niipped in the bud. Since you have had the blood testing and the biopsy, do definitely stay gluten free, and try and find an informed second opinion on your results. You are right that the lymphatic system is the first line of defense against infections, cancers, multiple attacks on the body, and if it is being challenged you need to know why.

I send my good wishes to you in finding a knowledgeable doctor in your area to help you on this. Do not let it rest, and do not go back on gluten.

fozbery Rookie
fozbery
Posted
  • Author

I don't blame you for not accepting an IBS diagnosis. Firstly, it is not a diagnosis, it is merely a description for symptoms that no one can figure out a cause for. Secondly, I just googled extra lymphatic tissue on the ileum, and one of the answers I came up with: Open Original Shared Link, linked it with early lymphoma, which is a known link with celiac disease. Now I am no doctor, and I do not know what your report said and whether there was any T-cell involvement, and I don't mean to be alarmist here and destroy your equilibrium, but I do think it is time you seek a second opinion on this and find out exactly what this report means.. You need to get a copy of all your results and find another doctor. Do not under any circumstances accept this as a diagnosis. Do you have a major medical center near you which can be trusted, especially one which specializes in celiac disease? Because I think an appointment there is what you need. Something is going on and needs to be niipped in the bud. Since you have had the blood testing and the biopsy, do definitely stay gluten free, and try and find an informed second opinion on your results. You are right that the lymphatic system is the first line of defense against infections, cancers, multiple attacks on the body, and if it is being challenged you need to know why.

I send my good wishes to you in finding a knowledgeable doctor in your area to help you on this. Do not let it rest, and do not go back on gluten.

Thanks for your answer.

I am living in Switzerland at the moment and I am lucky that I am seeing a specialist at a very well known hospital. I could try and find somebody who specializes in celiacs or ibs symptoms but it might be tricky. I am finding it hard to believe that a specialist doctor would overlook any signs of food intolerance, especially such a noticeable sign like the excess lymphoid tissue.

Do any other celiacs out there have this?

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your answer.

I am living in Switzerland at the moment and I am lucky that I am seeing a specialist at a very well known hospital. I could try and find somebody who specializes in celiacs or ibs symptoms but it might be tricky. I am finding it hard to believe that a specialist doctor would overlook any signs of food intolerance, especially such a noticeable sign like the excess lymphoid tissue.

Do any other celiacs out there have this?

Celiac can have effects on the lymphatic system. That is why we are more prone to lymphoma, although it is rare for it to develop. If you can seek a second opinion then there is no harm in doing so. If you can't then just go gluten free, strictly, see if it helps your issues. Being gluten free won't effect testing for anthing other than celiac and may resolve the lymph issue.

fozbery Rookie
fozbery
Posted
  • Author

Hi again

Im just posting again to update. I am still gluten and lactose free and starting to feel a bit better, mainly more energy and less gas and cramps.

I have got an appointment with another GI in one week.

Im just so confused, my stool test showed a really high level of calprotectin (indicative of inflammation) and thats why she insisted on colonoscopy but now she said it looks normal and is nothing to worry about. So why did she worry in the first place? I also dont think she took biopsies, she just looked at the colon.

Im also really worried about the lymphatic tissue I have on ileum. I think its called peyers patches but I m not sure. If its Peyer's patches I think this is very normal in children and young people (I'm not really that young though, 28). And I have read that it could be linked with food intolerance.

Im so tired of not knowing why I feel so bad. Feeling quite down :-(

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad to hear your starting to feel a bit better, stick with the diet and hopefully you will continue to improve.

fozbery Rookie
fozbery
Posted
  • Author

Glad to hear your starting to feel a bit better, stick with the diet and hopefully you will continue to improve.

Thank you for replying ravenwoodglass. I see that you were diagnosed by an allergist, maybe I should go to see an allergist. I am now sick again with a sore throat and headache but I suppose I have been stressed recently and not sleeping well. So fed up with guessing what is wrong. My immune system is at an all time low. But Im still sticking to the gluten free diet.

Its such hard work finding out which type of doctor to go to. If my Gastroenterologist has made her IBS diagnosis I dont really know where to go from there.

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nuttmegs17 Apprentice
nuttmegs17
Posted

I would second an allergist - I am currently seeing an integrated health doc who is also an allergist . I didn't really see him for my GI issues - I sought him out for help with my thyroid disease (had a separate appt for GI at an adult celiac center at Rush University) and he basically said as far as he was concerned, I could cancel that appt. Said he didnt care what the results of the blood test or biopsy said (esp since the blood test did not show a # for antibodies, just said negative), he said i should go off gluten immediately. Its his #1 advice for treating my hashi's

Celiac disease/gluten intolerance has been linked with SEVERAL autoimmune diseases....he said I should avoid gluten at all costs despite diagnosis bc he wouldnt be surprised if that was why my hashis was flaring up so bad.

It seems like celiac has to have exactly the RIGHT conditions in order to be diagnosed correctly. I kinda want the actual diagnosis only to prevent any kind of trouble in the future (never know when someone might need you to "prove" you have to avoid gluten, insurance/health wise). But since my biopsy is done, I'm going gluten-free.

It sounds like your body is fighting gluten. Of course, I agree with others that you should at least try the diet to see if you get relief.

I am going to go on the diet and give my body time to heal. I too felt worse when I went gluten-free and then went back on gluten for testing purposes.... felt worse than i did before i tried gluten-free! The 3 weeks I was gluten-free didnt magically make all of my symptoms go away but it helped some. If your body is messed up bc of gluten it's going to take a while for your body to calm down and heal.

My doc also laughs at "IBS" as a diagnosis - says it just means your stomachs messed up but don't know why....so yeah, dont stop at "IBS"

fozbery Rookie
fozbery
Posted
  • Author

Thanks for your encouragement nuttmegs. I was also wondering what is the difference between Celiac and Non Celiac Gluten intolerance? Is NCGI also damaging to the intestines etc? Is NCGI just Celiacs that is not officially diagnosed through biopsy?

fozbery Rookie
fozbery
Posted
  • Author

Thanks for your encouragement nuttmegs. I was also wondering what is the difference between Celiac and Non Celiac Gluten intolerance? Is NCGI also damaging to the intestines etc? Is NCGI just Celiacs that is not officially diagnosed through biopsy?

Hello me AGAIN!

I decided to get a copy of my results form my gastroscopy and it says:

diagnosis: microscopic, impressive atrophy of duodenal mucosa

YET THEY TELL ME I DO NOT HAVE CELIAC!! How is that possible?!

I am so confused!

mushroom Proficient
mushroom
Posted

I decided to get a copy of my results form my gastroscopy and it says:

diagnosis: microscopic, impressive atrophy of duodenal mucosa

YET THEY TELL ME I DO NOT HAVE CELIAC!! How is that possible?!

I am so confused!

Beats the heck out of me!! When is an elephant not an elephant?? I think everyone here is confused. The atrophy is even impressive!! If it looks like a duck, walks like a duck, and it quacks - it's a celiac in my book.

nuttmegs17 Apprentice
nuttmegs17
Posted

Mushroom - that's is just what my doc said to me (the allergist/integrated health one)....he was referring to my hashi's at the time, but the age-old duck saying is a good one ;)

foz - not sure what the difference is....i was encouraged that my doc at least referred to the recent study showing that medicine is now starting to recognize non celiac gluten intolerance. he's on the ball

I'm avoiding gluten b/c of hashi's as well - why roll the dice? I'm hoping it may help my antibodies go down eventually - there seems to be so much good to just going gluten free

fozbery Rookie
fozbery
Posted
  • Author

Ok now I just saw that I have a low level of lymphocytes in my blood test and nobody told me this! I am always sick, catching colds and viruses about once a month and now with this information I am getting really worried. I am so sick of diagnosing myself when there is obviously something wrong.

ravenwoodglass Mentor
ravenwoodglass
Posted

Ok now I just saw that I have a low level of lymphocytes in my blood test and nobody told me this! I am always sick, catching colds and viruses about once a month and now with this information I am getting really worried. I am so sick of diagnosing myself when there is obviously something wrong.

For some of us, myself included, I was always sick before diagnosis with colds and caught any virus or flu that was around. I think it was because my body was so taken up fighting gluten that it didn't have any reserves left to fight off anything else. I haven't been sick now in years so hopefully once you have been gluten free you will have the same effect.

fozbery Rookie
fozbery
Posted
  • Author

For some of us, myself included, I was always sick before diagnosis with colds and caught any virus or flu that was around. I think it was because my body was so taken up fighting gluten that it didn't have any reserves left to fight off anything else. I haven't been sick now in years so hopefully once you have been gluten free you will have the same effect.

Ok, update on me.

I now have to have a ct scan (tomorrow) but Im not really sure why. They still dont think it is celiacs. He said if it was celiacs I would have malabsorption which I apparently dont due to my recent blood tests. Is this true?

All I know is that I started to feel normal without gluten and now I am eating it again I am really sick :-(

cahill Collaborator
cahill
Posted

Ok, update on me.

I now have to have a ct scan (tomorrow) but Im not really sure why. They still dont think it is celiacs. He said if it was celiacs I would have malabsorption which I apparently dont due to my recent blood tests. Is this true?

All I know is that I started to feel normal without gluten and now I am eating it again I am really sick :-(

What is the CT Scan of,, Your abdomen??

fozbery Rookie
fozbery
Posted
  • Author

What is the CT Scan of,, Your abdomen??

yeah, sorry

kareng Grand Master
kareng
Posted

Ok, update on me.

I now have to have a ct scan (tomorrow) but Im not really sure why. They still dont think it is celiacs. He said if it was celiacs I would have malabsorption which I apparently dont due to my recent blood tests. Is this true?

All I know is that I started to feel normal without gluten and now I am eating it again I am really sick :-(

You might remind the doc that some of your intestine might be healthy. It is probably not all destroyed as it is very long. The undamaged part might still be getting nutrients. I was given large doses of iron and my iron levels came up despite the Celiac damage because some parts were able to absorb it.

Might also ask why your doc is so against an " easy to cure"?

ravenwoodglass Mentor
ravenwoodglass
Posted

Ok, update on me.

I now have to have a ct scan (tomorrow) but Im not really sure why. They still dont think it is celiacs. He said if it was celiacs I would have malabsorption which I apparently dont due to my recent blood tests. Is this true?

All I know is that I started to feel normal without gluten and now I am eating it again I am really sick :-(

The truest test is that you were feeling better gluten free and now that you have added it back in you are really sick. No matter what the tests results are your body is clearly telling you it wants you to be gluten free.

cahill Collaborator
cahill
Posted

Ok, update on me.

I now have to have a ct scan (tomorrow) but Im not really sure why. They still dont think it is celiacs. He said if it was celiacs I would have malabsorption which I apparently dont due to my recent blood tests. Is this true?

All I know is that I started to feel normal without gluten and now I am eating it again I am really sick :-(

I had a CT Scan of my abdomen during a recent ER visit. It is amazing what they can see with those things. Mine was enough to send me to a GI,, seeing her Monday

AzizaRivers Apprentice
AzizaRivers
Posted

To sum it all up:

It's very possible that all of your symptoms, including the findings of your colonoscopy and even your endoscopy, are indicative of either celiac or gluten intolerance. You CAN have celiac with negative bloods and biopsies, though in my opinion, if you know gluten is causing a problem, it doesn't really matter what name you give it. You tried going gluten-free and felt better, and that was only after 3 weeks (many of us take months to start seeing a difference).

I strongly advise you to go back on a very strict gluten-free diet.

fozbery Rookie
fozbery
Posted
  • Author

To sum it all up:

It's very possible that all of your symptoms, including the findings of your colonoscopy and even your endoscopy, are indicative of either celiac or gluten intolerance. You CAN have celiac with negative bloods and biopsies, though in my opinion, if you know gluten is causing a problem, it doesn't really matter what name you give it. You tried going gluten-free and felt better, and that was only after 3 weeks (many of us take months to start seeing a difference).

I strongly advise you to go back on a very strict gluten-free diet.

Hi thanks for your replys

a1956chill, what did they see on your ct scan? Apparently I have to drink something which I am a bit nervous about!

My big problem at the moment is that although the doctors did the biopsy they never did the blood test so I am eating gluten again in order to get that blood test done. They didn't do it because I told them I had already had it 6 years ago. Which is true (if i remember rightly) but I would like to have it again just to be sure. A lot can change in 6 years right?

Anyway now that I am eating gluten again it seems that I do feel a lot worse! So I really need to get this blood test done so that I can stop gluten again. I have an appointment with another GI tomorrow and my usual GI doctor on Tuesday so lets hope that one of them will agree to do the blood test so that I can stop gluten asap.

I also have an appointment with an allergist next Tuesday so lets hope between those three doctors that they find something! I can not tell you how exhausted I am !!!

I wonder if there are any more procedures that I will have to go through?!

This forum is very supportive and useful, I am very grateful to you all, thanks!

cahill Collaborator
cahill
Posted

Hi thanks for your replys

a1956chill, what did they see on your ct scan? Apparently I have to drink something which I am a bit nervous about!

I also have an appointment with an allergist next Tuesday so lets hope between those three doctors that they find something! I can not tell you how exhausted I am !!!

I wonder if there are any more procedures that I will have to go through?!

This forum is very supportive and useful, I am very grateful to you all, thanks!

When I got my CT scan report ( I had to ASK for it )it said "" Impression "" I guess that means what their Impression was??? 1. Minimal diverticulosis of the descending colon. ( I am full of poo :lol: 2 status post remote cholecystectomy ( I had my gallbladder out) 3. unbilical hernia ( at the site of the gallbladder removal :huh: )4. compression deformity of the T11 superior end plate ( I already knew I have osteoporosis)

The stuff I had to drink before the CT scan was not to bad ( gluten free) but it did give me major D

I am kinda going the same route,, not diagnosed, just saw an allergist( report says NO allergys ) Good to make sure there are no true alergys. (Intolerances wont show up in their testing)

Saw an endocrinologist ( got a message to call her today ) and I see the GI on Monday. I understand your exhaustion!!

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi thanks for your replys

a1956chill, what did they see on your ct scan? Apparently I have to drink something which I am a bit nervous about!

My big problem at the moment is that although the doctors did the biopsy they never did the blood test so I am eating gluten again in order to get that blood test done. They didn't do it because I told them I had already had it 6 years ago. Which is true (if i remember rightly) but I would like to have it again just to be sure. A lot can change in 6 years right?

Anyway now that I am eating gluten again it seems that I do feel a lot worse! So I really need to get this blood test done so that I can stop gluten again. I have an appointment with another GI tomorrow and my usual GI doctor on Tuesday so lets hope that one of them will agree to do the blood test so that I can stop gluten asap.

I also have an appointment with an allergist next Tuesday so lets hope between those three doctors that they find something! I can not tell you how exhausted I am !!!

I wonder if there are any more procedures that I will have to go through?!

This forum is very supportive and useful, I am very grateful to you all, thanks!

Since celiac can appear at any time in your life a negative test 6 years ago is worthless. Hopefully your next blood test will show something, do ask to get a hard copy of the test results as even a point or two into the positive range is positive but doctors will sometimes say a low positive is a negative.

It would be a good thing to ask that the liquid they give you for testing is gluten free, not all are.

You are clearly reacting to the challenge though so do go back to the diet strictly as soon as that blood work is drawn.

fozbery Rookie
fozbery
Posted
  • Author

Since celiac can appear at any time in your life a negative test 6 years ago is worthless. Hopefully your next blood test will show something, do ask to get a hard copy of the test results as even a point or two into the positive range is positive but doctors will sometimes say a low positive is a negative.

It would be a good thing to ask that the liquid they give you for testing is gluten free, not all are.

You are clearly reacting to the challenge though so do go back to the diet strictly as soon as that blood work is drawn.

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